Welcoming Hospice Care....

Yes, we made the big decision today to go onto hospice care.  We are a bit overdue on this decision but fighting so hard in this battle; we need a break and from what I understand they can help us quite a bit.  Now my cancer is considered technically End Stage Ovarian Cancer?  How completely morbid does that sound?  I'm still going to fight to live each and every day that I am blessed to have as they come no matter what and the decision to go onto to hospice care was definitely not an easy decision to make.  I only hope that I make it till the end of the year (or longer if that's even possible - that would freaking rock!).  No more gifts for me; just prayers and/or healing good thoughts!  I could really use some miracles!   What an understatement!   That's all I need now!  Can't take any of that shit with me and just by others thinking of me makes the world for me.  Thank you all!)

 One cool thing is that I am still able to get out and ride my old lady bike.  Yes, I'm calling it for what it is.  I can't walk for long distances and the bike is so very comfortable that I can still ride it.  All the power I need!

One thing that hospice care will do that makes me feel even better is that they will provide care for my loving caregiver and husband (my sweetie).  He deserves the world!   He has been having problems sleeping and he needs support just like I do.  Caring for a spouse who is facing the inevitable is hard.   He has such a heavy load on his plate in taking care of me each day.  What an amazing man he is and continues to be!  It is so not easy what he has to put up with and I admire him so deeply!)   I know that it kills him to see me in any amount of pain and sometimes I do have to admit that I hold the pain in as much as I can just so that he doesn't have to hear me suffering.  He always makes me feel so good no matter what the situation is; just hearing his soft voice calms me.  OK I already wrote a tribute to him not so long ago but if I get a chance to brag; I will do it!  He deserves that and so much more!

This photo is of Blue Belle and Jagger; a good friend of hers and Jagger's mom.

The decision to go onto hospice care was not an easy decision for me to make because they are dealing with end of life and I guess that's what's going on with me unfortunately.   Many  hospice care workers I hear are ready to speed up the process and I will not at all be about that!   No Way do I want this process to go on faster than ever!  That sucks!  I want to drag this on for as long as I possibly can and I will be sure to make that as clear as possible.   I guess we are a dime a dozen but still!  I'm just not ready to let go so quickly.  I do know that it will happen one day; but like all of you; I just don't know exactly when.   I was not at all ready to go onto Hospice Care last year or even 6 months ago when I have been faced with this decision for so long.

Its weird to see how right that psychology class I took at Indian Hills Community College so many years ago was.  You do go into stages of acceptance when you are dying with a disease.   I think the first was utter fear but it's actually denial.  Oh yeah there was plenty of that!  I wanted to hang on so bad; don't get me wrong I still do.   I did go through anger last year; although I am still a bit bitter about it all? I still wonder "why me"?  Every cancer patient goes through that.  Then there is other thing called "Bargaining" where you think if you do something different maybe the inevitable won't happen to me?  We did the pain pump, more radiation, and then I got good old R2 so that I could try to eat my favorite foods with out having to puke up so much; I still puke quite a bit.  Thank god for good old POT!)  It helps some!  Then there is the depression which is really hitting us both quite a bit.  My honey and I held each other for like hours sobbing together.  Love has brought us through so much of this shit.   We are both getting closer to the acceptance of this but it's still very hard; especially for someone as hard headed and stubborn as myself!  Oh and the beautiful photo above  was once again taken by Elena Zhukova a few years ago.

I am getting my pain pump turned up tomorrow at 2pm and then on Thursday; I think the hospice people will be coming over.  I plan to document as much as I can in hopes all of my information may help many, many others.

I will never forget when my doctor came into my room and told me that he felt my battle should end.  It kind of has; we can't try to kill any cancer (it's taken over) but I am living with cancer (numbing the pain when needed).  Cannabis is a blessing for me right now in so many ways.  It is the best pain killer; sometimes I need more help so I have to go stronger but in the morning hours it works best.   I know it is the reason why I am still around to this day; I got many more years than most would have had with my disease.  I have outlived many other patients and yet this disease is still quite deadly.  I hope in the future that all cancers will be looked at more seriously as they do with breast cancer; we need a cure!  I would hate to live in other states where they would deny you Constitutional rights (helping ease unnecessary pain and suffering);   It seems they give more rights to those on death row?  I am so glad it is legal in my state and I didn't have all the hell that many other patients had to go through of getting arrested or having a gun pulled on me in the middle of the night?.  I have had nothing but support for my decision to use and I am very thankful for that and the amount of time it gave me with my loved ones.  It has been a total blessing in so many scary situations we have faced!

I'm still going to fight live as much as possible;  to have  more of those good days and try to see as many movies as I can.   There are a lot of good movies coming out lately? Well at least I know I won't have to run and take a dumpers during the middle of a movie any more; I just can't eat any popcorn or Milk Duds?  I think that is what they are called.  Milk Chocolate Caramel balls?  Yummie!  Maybe I can bring R2 with me and stomach suck my tummy right after eating those yummy candies?  Well I do know Blue Belle will be sitting there enjoying the movies with me.  What a crazy request because I still have my appetite just can't deal with the pains of this monster eating me alive.  I hope and pray that one day there will be a cure for cancer and that others don't suffer as I do.  Peace and Love to all of you! I hope to post a video later on today!

Oh and I do wish to help these horses if all possible.  They are the result of the female hormone Replacement Industry.   This is Bess Nick and he was born in May 2007. Here is more information on Nick: Nick is a big bold moving horse. He is the most amazing color, a red roan with lots of sabino markings. He is dirty in this photo, we can only imagine how he will sparkle with a good bath! He should do will as a riding or driving prospect. He grew up in Alberta, Canada running in a huge wooded pasture. We brought him to The Animali Farm because he was going to be sent to slaughter. He was in the wrong place at the wrong time, and such a beautiful horse. He is halterbroke only, but is going to be used in the Starter class at Monty Roberts School in September 2010 where he will get some good training.  Please contact Jennifer Johns or Cheryl Forbes if interested in this beauty; animal@aol.com or (805) 938-0174.

I'm dying to live...

I guess I'm reacting to the media and them finally taking seriously stupid bullying of kids at school and the rash of teen suicides that have happened just last month.  Seeing those photos of those young children who had killed themselves is really heart breaking and I feel so bad for those families.  I offer my deepest condolences.  I hope those families eventually find peace and solace.   What a horrible tragedy and for there to be so many of them; who knows how many there really are out there?.  

I think last month or so there was a sick guy prowling the internet looking for teens who wanted to commit suicide and sick enough to request that they do this in front of a camera while encouraging them?  How can someone actually be that evil?  As far as I am concerned this sick person is a murderer for convincing kids to kill themselves and then hearing Anderson Cooper (yes, I watched part of Dr. Phil the other night = what I could stand of it).  I can't really watch too much TV that upsets me, seeing a program about kids killing themselves while I am fighting so hard to live is heartbreaking enough.   It's really sad that these kids didn't understand that life only gets better with time and boy does it!  I wish their parents had been able to tell them this or get them the help they needed or that schools were taking more seriously how cruel bullies in Middle School and High School; hey and even college can be.

If you or someone you know is having thoughts of suicide; call 911!

SUICIDE HOTLINE

1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255)

or check out a good friend of mine's website: http://peerabuse.net/ .  I'm glad my friend Elizabeth Bennett from high school put this website and blog together which I know will help many to appreciate the life they already have and help address issues with bullies.  Bullies are pathetic cowards who abuse others.

Are some of these kids (the bullies) not taught compassion anymore these days?  It kind of reminds me of a chicken pen where the weak are pecked to death until they die; these kids  seem to really go for the jugular veins of these sensitive sweet kids?  Do parents not have the time to teach them good manners and how "what comes around usually goes around?".   Treat others how you would want to be treated?  Would they have wanted to be treated this way;? even those bystanders of the bullying? Grow a backbone and stand up for what isn't right or is right; don't just join in?  WTF!? The kids that caused these children to take their lives are going to be affected for the rest of their lives; maybe not now but it will always be in the back of their minds that they caused someone to kill themselves.  I wouldn't want that on my plate for sure!  I would never be able to sleep at night if I caused such a thing!

I think bringing a child to see other sick children in a hospital setting might make them more thankful for what they do have and or having them volunteer helping others who are not as fortunate as themselves or just putting them in more real life situations where they are taught empathy for others might help?   I'm naive so I might be wrong about all of this but it seems to make sense to me.

Life can be so beautiful when you get to your 20's, 30's, 40's, I hear 50's, 60's, 70's and sometimes even 80's can rock!   OMG! Snowboarding is with out a doubt one of the most amazing feelings in the world that I will never forget!  Sometimes I even dream about it; it's my happy place!)  I wouldn't want to die with out trying that for sure!  I'm fighting so hard to stay alive  right now and I wish I could just live for so many more years!  I want to go snowboarding really, really bad this winter (maybe for the last time ever?).    I wish I could have my life back the way it was before all this horrible cancer.  Too bad I had to have one of the more deadlier types of cancer; while many probably would have given up on life much earlier; I just can't do it.   I don't want to.  Hopefully this blog can help save other women's lives and bring more awareness to this horrible disease?

Hell let's all get along like my dog does with all of her neighborhood buddies.  Many of you may have already seen this video on my Facebook page but for those of you who have not; hope you enjoy!

OK so here's my deal right now honest to goodness this is what I am facing.  Please let me know what you think about this issue and if you think I am wrong with my requests for  an artificial feeding tube?  Unlike Terry Schiavo, I am alive, walking around, conscious, riding my bike, and loving my life even though I have horrid amounts of pain; I still love it.  I don't feel that I should have to have my feeding tube turned off in order to be comfortable?  Well first of all we all don't leave this planet alive and some of us have to go sooner than others.  I do realize that my time is coming up and I feel it and realize that this reality is part of my future; hell its part of all of our futures unfortunately!(

Well my tummy is toast and so are my intestines.  I can't eat anything any more and if I were to go onto hospice care they would give me all the support I needed to die comfortably and take care of the pain.  The problem is that I may last a week or two that way.  I want to live longer than that.  The only thing I can't do is having my my TPN (Total Parenteral Nutrition) turned off just yet.  I was told by one of the hospice nurses that eventually I will need to have it turned off and my concerns were that I do not wish to starve myself to death.  OK the TPN may be feeding those tumors but it's also feeding my poor body right now and I feel hungry most of the time which is a blessing.  Well because as long as you are hungry, you still want to live.  One of the things that happens to you before you die (sick I guess) is that you loose your appetite completely?  I had no idea? It's strange I know; I didn't quite understand it but eventually it will come to that.

I just can't imagine myself not being hungry but it does happen all the time? The body just shuts down and eventually can't handle digesting food anymore.  Well my intestines and stomach are definitely there and I still have hope that maybe they will still heal. I'm praying for that?  I want to live so bad; I hate having to face this shit!  It absolutely sucks!(  I kinda bummed about all of this.  I promise to try my best to update and let everyone know what it is like to be on hospice care and everything that happens to me and around me.  It should be an interesting and helpful perspective for many others out there like me.

My pain pump is finally at the final point where it may not be turned up anymore because of some crystals that can form in the pump at a high dosage of one of the drugs inside the pump.  My pain doctor has suggested that I stick with my oral medications which soon I won't be able to handle them which is another reason why we are considering hospice care.  I am going through too much pain for a good quality of life and that's what I need right now.  I need to be comfortable and not have to deal with all of this pain; hospice nurses are specially trained to help make those transition easier.  The key word is Transition.  I had my massage yesterday with one of the hospice trained individuals who helped me understand some of the areas of Hospice care that I didn't  quite understand before.  She works for Hospice of the Valley which is wonderful organization of loving people who  help those who are close to ending their lives here and starting their next journey.   I really sat on the fence for a long time when everyone else around me was suggesting that I go on it.  I was just too scared and to be quite honest; I still am; don't get me wrong!  I don't want to die but do I have a choice?  We will see on Monday when I make my argument to keep my TPN and R2 (my stomach sucking pump).  That thing is so freaking awesome!)  I want to be able to pump my stomach too with my wonderful R2 (Gomco - Constant and Intermittent Pump);-)  I know it sounds like such a waste!  I want to eat, puke it up or suck it up!)  Currently that's how I get my fix for eating; yeah it sucks but at least I'm alive!)

On Monday we are meeting with the hospice nurse, maybe a social worker; either way communication is key.  I don't want to go into this with out my feeding tube  (&my R2) and hospice is against feeding tubes and more labs for me.  They do want me to understand that I will have to give it  (feeding tube) up eventually; also 911 is also prohibited for me?   I have to understand that this is "end of life care".    I do understand that my end is coming up but I don't want it to be sooner rather than later.  Why not live as long as I can? I just wish to be comfortable and with out so much pain?  If I can't eat organically, keeping me alive artificially with a feeding tube; is that wrong or too much to ask?  Is my life even worth it?  Many hospice care workers are against the TPN but for me I want to live as long as I can and I don't wish to starve to death just yet.  I'm too young to have to be thinking about this shit!(

I hope my post will help others decide that it's stupid to end your life foolishly (especially if your health is wonderful!?) when there are so many of us fighting to live?.   Some of us out there think its a cop out to just end your healthy life over stupid  shit things that will end soon and of course things become so much better!  If you can eat, shit, walk, love, and so much more; life is definitely worth living!   Ain't no sense in ending a good thing!  Things always get better with time!)  I'm fighting as hard as I possibly can to stay alive for as long as I  can.  I love my honey, my friends, my family, my pets and so much more!   It is another journey for most. Yeah, I will drag this out for as long as I possibly can!) I want to live so badly but we all don't have a choice when  our time comes.  I wish all of you Peace and Love!)

Decrease my intake...when will it work?

Decreasing my imput is what my doctor is telling me to do and he is on call this weekend in case we need to go in which is a relief.  These past couple of days have been incredibly painful  and trying for me as I continue my efforts to avoid going into the ER.  I'm so scared that I won't come home alive and that this could be my time.  I sure hope not.  True, none of us know and by me being so scared it's not helping me in any way.  I want so bad to survive this horrible curse as long as possible because of all the great things in my life; most of all my husband.  Sometimes I even feel guilty for it seems that I'm just stringing him along  this horrible journey of mine and that he indeed deserves  so much better than this.  I love him with all of my heart and soul and  I hate more than anything seeing him suffer seeing me like this and in the pain that I am suffering.  It's sometimes too much!

Last night was the most trying night of all and while  I did make it through the night sleeping on the couch;   I had to leave my G-Tube open all night so that my stomach contents could constantly drain. or else wake up from time to time feeling like I was having the most horrid heart burn/ attack ever; just like my heart is being being squished beyond recognition; like a car is running over my heart.   It is horrific pain.   I'm not so sure I like having to do all this shit to stay alive but I just do what I need to do everyday.  I'm surviving artificially right now and my husband and I have been talking seriously about taking me off TPN because it seems its doing me more harm than good.  It doesn't seem like healthy conversation to most but what am I to do?  I have to think about the future and if I will make it? 

I'm puking all the time it seems and constantly having to drain my stomach.  I can't even go on a short walk with my dog without puking somewhere in the bushes.  This time when I puke it's horrible pain on my tummy and my heart.  It almost feels as if I am having a heart attack each time and I cry and hold my knees  and bang on my chest to try to ease the pain.  So far the vaporizer is working at least for a little while; the Dilaudid is like eating sugar; it's doing nothing for this pain.  My mouth seems to have to stay dry because even if I have just a sip of water;  if I do, I get sick.  Something is seriously wrong with me and we may be heading into the hospital today.  This is just an update for many.  As I was typing; my husband had just replaced my medical waste bag and this little clown was around to make me smile even though its very hard at this point being so scared for my life right now.

I took Blue Belle outside to play with one her little doggie friends and I sat out in the sun for a bit to absorb some vitamin D.  I hope to feel better as this day progresses. 

I promise to fight as hard as I can but I don't know what's around the corner for me or if anything can be done to ease my suffering.  Peace and Love to all of you!  I hope one day there will be a cure for this dreadful disease and that NO ONE has  to suffer as I do.  I don't mind the suffering too much;  if is more than worth it to be around for my honey.  I feel that I'm too young and still too strong to let go just yet!)  For now I'm going to fight as hard as I can to be around and give others hope that they too can survive this disease despite setbacks.  The human body can be very resiliant and I will face what I have to face what ever happens to me.  I'm ready still!)

More updates to come!)